Sexual Health Data

Ann Coffey Excerpts

Thursday 13th December 2012 Commons Chamber

[Ann Coffey (Stockport) (Lab)]

Over the past 20 years, we have seen numerous high profile inquiries and serious case reviews after children have been harmed and abused. Each one has said that failures in data sharing and ineffective inter-agency working played a significant role in the child’s injury or death. Lord Laming’s progress report on child protection in 2009 following the Victoria Climbié and baby P inquiries stated:

“Despite the fact that the Government gave clear guidance on information sharing in 2006 and updated it in October 2008, there continues to be a real concern across all sectors, but particularly in the health services, about the risk of breaching confidentiality or data protection law by sharing concerns about a child’s safety. The laws governing data protection and privacy are still not well understood by frontline staff or their managers. It is clear that different agencies (and their legal advisers) often take different approaches.”

Disappointingly, that was echoed nearly three years later in the recent report by Sue Berelowitz, the deputy Children’s Commissioner, into sexual exploitation in gangs and groups. She highlighted the difficulties that she had experienced in collecting data from health agencies.

The overarching aim of year one of her inquiry was to identify the prevalence of child sexual exploitation and the warning signs that victims present, and to quantify the number of children at risk. She identified 16,500 children as being at high risk, using multiple indicators, and said that the figure would have been higher if the inquiry’s attempt to obtain health data had not been frustrated by “patchy” and “inconsistent” responses.

Of the 14 “signs” or behaviours generally seen in children who are already being sexually exploited, six relate to data collected by health organisations. Those health signs are: physical injuries; drug or alcohol misuse; repeat sexually transmitted infections, pregnancy and terminations; poor mental health, and self harm and thoughts of suicide. It was therefore important for the purposes of her inquiry that the deputy Children’s Commissioner was able to access that information.

Initially, it was her intention to collect individual level data in relation to children who have repeatedly attended clinics with sexually transmitted diseases and had had more than one abortion. The intention was to share the data with other known CSE indicators to assess the prevalence of child sexual exploitation.

However, because of current regulations it was not possible to get individual data on terminations. On sharing sexual health data, there were different legal opinions from the Department of Health, the Office of the Children’s Commissioner and individual primary care trusts. The Department took the position that it would share its legal counsel and direct areas to not share that data. Aggregate national data provided by the Health Protection Agency and the Department of Health showed that 11,800 children had presented at a sexual health clinic on more than one occasion, 900 of whom had a repeat sexually transmitted infection, and 1,193 children under the age of 16 had an abortion who had also had at least one earlier termination. Those numbers indicate how important it is to have individual sexual health data to identify children at risk of child sexual exploitation.

The Department said a decision on substance misuse/mental health data could be made at a local level. Services operating in 41% of primary care trusts around mental health provided individual level data, while services operating in 30% of PCTs around substance misuse provided it. Those differences in data provided by PCTs indicate the wide variation in interpretations of existing law, regulations and guidance. A central request to the National Treatment Agency for Substance Misuse, which collects individual data on people accessing substance misuse units nationally, was also refused due to concerns about breaching the Data Protection Act 1998 and health regulations. In the end, the National Treatment Agency provided aggregate level data that was not possible to match with the other indicator data obtained at an individual level.

In answer to my parliamentary question last week, I am aware that the Minister has commissioned Dame Fiona Caldicott to lead a review on the sharing of health data that strikes an appropriate balance between the protection of confidential and identifiable information, and the use and sharing of that information for research and a range of other purposes. Given the extent of the numbers of children attending sexual health clinics, it is crucial that, for example, the frequency of visits to a sexual health clinic, which may be an indicator of sexual exploitation, is capable of being shared alongside other health data at a local children’s safeguarding board level if we are serious about better protecting children from child sexual exploitation. The problem is not only confined to the health professional sharing information with non-health professionals, but it seems that there are problems with health professionals sharing information with each other.

Anecdotally, the other day I was told by a GP that he had contacted a health visitor to discuss an issue relating to a family he was concerned about, and was told by the health visitor that he had to get the patient’s permission to do so. The General Medical Council issued guidance to doctors in July 2012 on information sharing, but of course this was not issued to health visitors. Unless we resolve the confusion about data sharing, it is going to result in different practices in different areas. In some areas, emphasis on confidentiality may mean that a child is continuing to be exposed to risk of child sexual exploitation because data that could identify the risk are not being shared, while in another areas, because of different practices, appropriate interventions are being made.

I have come across similar barriers to data sharing as chair of the all-party group for runaway and missing children and adults. It seemed to us incredible that Ofsted was not able to share the names and addresses of children’s homes with the police because of existing regulations. I am pleased that the Government are now consulting on a change to the regulations that would allow this to happen. On the face of it, it seemed like a good principle to keep a child’s address secret. However, in trying to safeguard one piece of information about a child’s life, we were exposing that child to undue risk. It is the same with sharing sexual health data, where we are often looking at complex issues of confidentiality versus safeguarding. It is a shame that having sorted out data in one area, we still see barriers in another.

This is a difficult area, and it is made all the more difficult by the fact that there is separate guidance from the Department of Health and the Department for Education. To give one example, the Department of Heath guidance about patient confidentiality issued in 2003 says that NHS professionals must take all necessary steps to secure any information capable of identifying an individual examined or treated for any sexually transmitted disease, and that it shall not be disclosed except where there is consent to do so or to prevent the spread of the disease. The updated guidance on November 2010 says that decisions about disclosures of confidentially sensitive information must be made case by case. Having read both these sets of guidance, I find it easy to see how there can be widely differing interpretations of what data to share and with whom.

We also have statutory guidance from the Department for Education entitled, “Working Together to Safeguard Children”. It was published in 2010, but is currently being revised. The 2012 consultation paper stresses that partners and agencies should proactively share information with each other and with the local safeguarding children boards. It says that from 2010 to 2011, 615,000 children in England were referred to children’s social care services by individuals who were concerned about their welfare. The guidance goes on:

“A consistent message from research, which has been reinforced in every high profile inquiry on child protection, is that children are best protected when professionals are clear about what is required of them individually, and how they need to work together... It is important that children receive the right help at the right time. For that to happen, everyone who comes in contact with them has to play a role in identifying concerns early, sharing information, and taking prompt, informed action. This will involve a range of professionals - for example midwives, health visitors, GPs, early year’s professionals, teachers, police officers, youth workers voluntary workers and social workers. It will require all professionals to be vigilant and take prompt action when they suspect that a child is suffering harm.”

The guidance also points out that, under section 11 of the Children Act 2004, public heath and NHS organisations are among those key organisations that have a statutory responsibility to make arrangements to ensure their functions are carried out with regard to safeguarding and promoting the welfare of children. The Government are rightly urging local agencies to work together more effectively to safeguard children from child sexual exploitation, but the confusing and conflicting guidelines from the Department of Health and the Department for Education are creating barriers to effective data-sharing arrangements at a local level.

The confusion over current guidelines on sharing health data is giving rise to different interpretations and practices locally, which has led to a postcode lottery when it comes to safeguarding children. I have another anecdotal example. At a child sexual exploitation meeting in Greater Manchester where professionals were sharing data to try to assess the risk to a particular girl, it transpired that the girl had attended accident and emergency for treatment—a fact that had not been disclosed by the health worker present. She subsequently said that she thought that health information was confidential.

We are also facing big organisational change in the health service and in Greater Manchester. For example, several sexual health services run by different primary care trusts are due to be transferred to 10 local councils in 2013. I am pleased that Greater Manchester is trying to work towards a consistent interpretation of the different guidance from the Department of Health and the Department for Education for the whole of the Greater Manchester. It cannot be right that the safety of a child at risk of child sexual exploitation is dependent on where they live.

I hope that, in her review, Dame Caldicott will bring together existing guidance from both Departments that will allow local safeguarding children boards to share information in the best interests of the child. The importance of the proper collection of data and data sharing cannot be over-emphasised. The all-party group’s report in June emphasised the link between going missing and the risk of sexual exploitation, but no one fact will be enough and often something that does not seem significant to one agency might assume greater significance when placed with a fact picked up by another agency.

For example, a child who is reported missing for repeated periods, but not for any great length of time, might be the same child who visits a sexual health clinic with an older man. Those two factors being put together would set alarm bells ringing, whereas in themselves they would not seem significant. That is the value of sharing information. It is surely wrong that a child can walk out of a sexual health clinic back to a predator without alarm bells being rung. I am not advocating the routine sharing of every visit by every child to a sexual health clinic, but I believe that health and other professionals need better guidelines and training about when they should share information in the interests of safeguarding a particular child.

Given that identification practices of child sexual exploitation vary significantly across the country, with many areas adopting a reactive approach, accurate data are essential. That is particularly important in relation to black and minority ethnic victims. The Office of the Children’s Commissioner found it difficult to find information about that group of victims, although it established under-reporting of child sexual exploitation in BME communities. That information is significant, given that the general perception appears to be that sexual exploitation by gangs and groups is primarily a crime committed against white children. We have to be able to establish the true extent of sexual exploitation in BME communities, as well as understanding the underlying reasons for under-reporting. Those children have a right to our protection. That makes it even more critical that these sexual health indicators, which indicate risk, should be shared with other agencies.

Sharing data on health is vital in protecting children. These data will be of most value when matched with the data collected by police on missing incidents, by local authorities on absence from school and by youth offending teams, to identify and safeguard all children at risk of being sexually exploited. Lord Laming described the situation eloquently when he said:

“Whilst the law rightly seeks to preserve individuals’ privacy and confidentiality, it should not be used (and was never intended) as a barrier to appropriate information sharing between professionals. The safety and welfare of children is of paramount importance, and agencies may lawfully share confidential information about the child or the parent, without consent, if doing so is in the public interest.”

This week Sue Berelowitz summed up the problem when she told the Select Committee on Home Affairs that misunderstandings about the Data Protection Act were

“getting in the way of children being protected”.

It is surely time to ensure clearer guidance about the disclosure of health information in the interests of protecting vulnerable children, who should be the main focus of our concern. I hope the Minister will respond by sending out a strong message to that effect.